Mapping of Data-Sharing Repositories for Paediatric Clinical Research—A Rapid Review

Mariagrazia Felisi, Fedele Bonifazi, Maddalena Toma, Claudia Pansieri (), Rebecca Leary, Victoria Hedley, Ronald Cornet, Giorgio Reggiardo, Annalisa Landi, Annunziata D’Ercole, Salma Malik, Sinéad Nally, Anando Sen, Avril Palmeri, Donato Bonifazi and Adriana Ceci
Additional contact information
Mariagrazia Felisi: Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF), Via Luigi Porta, 14, 27100 Pavia, Italy
Fedele Bonifazi: Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, Via Giulio Petroni 91/D, 70124 Bari, Italy
Maddalena Toma: Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, Via Giulio Petroni 91/D, 70124 Bari, Italy
Claudia Pansieri: Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF), Via Luigi Porta, 14, 27100 Pavia, Italy
Rebecca Leary: John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne NE1 3BZ, UK
Victoria Hedley: John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne NE1 3BZ, UK
Ronald Cornet: Department of Medical Informatics, Amsterdam Public Health Institute, Amsterdam UMC (Academic Medical Center)–University of Amsterdam, Medical Informatics, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands
Giorgio Reggiardo: Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF), Via Luigi Porta, 14, 27100 Pavia, Italy
Annalisa Landi: Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, Via Giulio Petroni 91/D, 70124 Bari, Italy
Annunziata D’Ercole: Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, Via Giulio Petroni 91/D, 70124 Bari, Italy
Salma Malik: The European Clinical Research Infrastructure Network (ECRIN), 30 Bd Saint-Jacques, 75014 Paris, France
Sinéad Nally: Novartis Pharmaceuticals, 203 Merrion Rd, Dublin 4, D04 NN12 Dublin, Ireland
Anando Sen: John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne NE1 3BZ, UK
Avril Palmeri: John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne NE1 3BZ, UK
Donato Bonifazi: Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF), Via Luigi Porta, 14, 27100 Pavia, Italy
Adriana Ceci: Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, Via Giulio Petroni 91/D, 70124 Bari, Italy

Data, 2024, vol. 9, issue 4, 1-22

Abstract: The reuse of paediatric individual patient data (IPD) from clinical trials (CTs) is essential to overcome specific ethical, regulatory, methodological, and economic issues that hinder the progress of paediatric research. Sharing data through repositories enables the aggregation and dissemination of clinical information, fosters collaboration between researchers, and promotes transparency. This work aims to identify and describe existing data-sharing repositories (DSRs) developed to store, share, and reuse paediatric IPD from CTs. A rapid review of platforms providing access to electronic DSRs was conducted. A two-stage process was used to characterize DSRs: a first step of identification, followed by a second step of analysis using a set of eight purpose-built indicators. From an initial set of forty-five publicly available DSRs, twenty-one DSRs were identified as meeting the eligibility criteria. Only two DSRs were found to be totally focused on the paediatric population. Despite an increased awareness of the importance of data sharing, the results of this study show that paediatrics remains an area in which targeted efforts are still needed. Promoting initiatives to raise awareness of these DSRs and creating ad hoc measures and common standards for the sharing of paediatric CT data could help to bridge this gap in paediatric research.

Keywords: data sharing; paediatric; clinical trials; repository (search for similar items in EconPapers)
JEL-codes: C8 C80 C81 C82 C83 (search for similar items in EconPapers)
Date: 2024
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